15 Things People With Arthritis Want You To Know

"My joints feel like lead, and I can be in such pain I can sometimes be physically sick."

1. There's no one type of arthritis.

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"Arthritis isn't just one thing" says Anisur Rahman, professor of rheumatology at University College London. "The term 'arthritis' implies having problems with the joints. So what people generally understand as arthritis is where a person suffers symptoms of joint pain. But there are lots of conditions in which your joints can give you problems.

"Firstly, there's osteoarthritis, which is wear and tear of the joints, which tends to happen in older people. Most people will have an older relative who will have a bit of arthritis. That's what people think of as arthritis. Then there's a whole other type of arthritis that occurs in younger people. It's much rarer, and it's not wear and tear. It's where your immune system starts to attack your own body. The immune system attacks the joints, making them inflamed and causing pain.

"Rheumatoid arthritis is probably the most well-known version of that, but there are other types as well. And there are a number of different auto-immune disorders, all with different names, all of which can cause inflammation in the joints."

2. And "aches and pains" are not the same as arthritis.

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"Most people get aches and pains sometimes. Some people are hyper-mobile, for example – they're double jointed. Some people get aches related to sports or poor sleep or depression and so on. And in most cases, those are not arthritis.

"The amount of people with rheumatoid arthritis in the UK is about 1%. It's a 1 in 100 type of disease. But! There are some clues which make it more likely. One of those is swelling of the joints. If you have hot, red swollen joints and you're feeling very stiff and generally unwell – and if the symptoms vary from day to day – these are more telling factors suggesting you could have that type of arthritis.

"And that's when you need to go and see a doctor. With tests, it's usually pretty accurate to diagnose who has this type of arthritis or not."

– Professor Anisur Rahman

3. Your self-esteem can take a hit.

Francesca Blunt

"Life changed instantly, my world was turned upside down. At 18 I’d gone from being a fit athlete, playing football and skiing, to feeling like an old woman ready for the scrapyard. My dreams were temporarily put on hold.

"Looking back I sunk into depression. There was not a day that I wasn’t in pain. I'd got used to just staring at the ceiling, trying to think through the pain. What did I do to deserve something like this? Is this now my existence?

"Chronic illness is a life sentence. Isolation followed quite quickly after diagnosis, my self-esteem went from 10 to 0 over night. I rarely saw my friends; I hid away grieving for the outgoing and adventurous, positive person I once was.

"Over time I slowly dealt with days and the disease better, I’d get out more, I would push myself to make the most of the days and my life. The days where I was in less pain than normal I'd start catching up with friends and going out, but at any time the arthritis would make itself heard and I'd often return home. Over the years I’ve learnt how to cope; you’ve got to learn, otherwise the pain swallows you up.

"Around a year ago I finally came to terms with my illness. I am no longer grieving for the person I left behind; I am in awe of the woman I have become".

– Francesca Blunt

4. Diagnosis can be tricky.

Carrie Thompson

"The journey to my diagnosis was very complicated. I was officially diagnosed at 18 years old but I had suffered with joint pain since age 7. The flare-up which led to my diagnosis started in September 2010, while I was at a specialist music boarding school, studying for my A-levels. It began with extreme tiredness and pain and stiffness in my joints for about an hour in the mornings. I put it down to the stress of school and music college applications.

"By Christmas 2010, I was finding it a real challenge to dress myself and my mum, concerned by this, sent me to my GP, who referred me to a rheumatologist. Fast-forward to February 2011 and I was essentially paralysed from the neck down. I was unable to feed, bathe, and dress myself. I needed my parents to help me to the bathroom and I needed a wheelchair. I had a barrage of tests, testing for multiple conditions. It wasn’t until I was admitted into hospital due to how seriously ill I was that I received a diagnosis of rheumatoid arthritis.

"I was in hospital for 10 days, and the severe inflammation in my body had caused me to have fluid on my lungs as well. I was immediately started on treatment of strong steroids, a drug called methotrexate, and strong pain relief to attempt to bring my arthritis under control. Despite how unwell I was, to receive a diagnosis was a great relief and that meant I could finally receive the treatment that I needed."

– Carrie Thompson

5. It's not just stairs that are a challenge.

Catherine Manning

"Arthritis affects every part of my life, from getting out of bed, washing, dressing, eating, getting out and about to going to bed at night.

"Arthritis is a constant battle and a challenge to lead what is thought of as a normal life. Arthritis makes my joints stiff and painful. Just getting dressed is a chore and a painful and frustrating process most people take for granted."

– Catherine Manning

6. A typical day can vary.

Monique Francois

"A typical day would be waiting for my mum to make me breakfast. My mum then rubs my joints and muscles with oil to help them to unstiffen. My mum is my carer, so I am with her pretty much all day, every day.

"I was 25 years old when I was diagnsoed with systemic lupus erythematosus. SLE is an auto-immune condition, where the body's immune system has been damaged. This damage means that the body's natural defences attack itself; resulting in symptoms of extreme fatigue and weakness, joint/muscle aches and pains, which can develop into rheumatoid arthritis, hair loss (which I suffered in 2011), and inflammation of the tissues covering internal organs with associated chest and/or abdominal pain. In 2012/2013, my kidneys became inflamed due to high lupus activity, and I was required to have chemotherapy in order to kill the affected cells which had been causing the inflammation."

– Monique Francois

"My daughter Mae is currently experiencing a flare, which is not yet controlled by her methotrexate, so she’ll get up slowly in the morning, and get ready for school and take her medicine, including an injection once a week. We scoot to school (with me helping when necessary), and then she spends the day there. She has trouble with the stairs at school, but generally has fun with her friends and makes fart jokes and acts like a normal 10-year-old, though she’ll probably take some additional painkillers at lunchtime.

"After school she goes to activity clubs a couple of days a week, but we have to be a bit careful not to overdo things. We scoot home, and sometimes she’ll have a blood test at home, followed by lots of cuddles with the dog we got her to help her overcome her needle phobia (which worked very well). She does some mindfulness, and plays. She’ll typically read until we drag the book off of her, and then we’ll try and convince her to have a reasonably early night.

"Mae sometimes sleeps badly during flare-ups (she didn’t sleep through the night until she was 6, when methotrexate completely alleviated her symptoms), and we’ve recently introduced her to the ‘spoons’ chronic illness concept, so whilst like all kids she’s always trying to stay up a little later, she’s interested in the concept of being able to do more if she looks after herself well."

– Keri Webster

7. Treatment plans differ, but they're all long-term.

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"In terms of osteoarthritis, there aren't any drugs that will reverse it. So the treatment plan is painkillers, things like physiotherapy to improve muscle power, and in more extreme cases there are joint replacements.

"In younger people – those with immune-system attacking arthritis – there are drugs which suppress the immune system. These are sometimes called 'disease-modifying anti-rheumatoid drugs'. And they are given early in the disease – this is a new thing over the past 10/15 years – it's been recognised with this kind of arthritis, it's very important to get on top of it quickly. They stop there becoming damage to the joints. So you'd be put on these drugs quite soon (within a week) and it's long-term. It's not something that you just take for a few weeks. But the good thing about these treatments is that it's possible to suppress the disease, and give people a good quality of life."

– Professor Anisur Rahman

8. You have to ration your energy.

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"I can wake up feeling like I have been hit by a bus. My joints feel like lead and I can barely move, and I can be in such pain I can sometimes be physically sick. The fatigue is also crippling. I can wake up feeling like I haven’t slept at all, even if I went to bed at 6pm the night before.

"On those mornings, the main priority is how to make yourself feel well enough to get on with your day. I use heat packs and ice packs on my joints to loosen them up. I take the medications I take every morning, which for most arthritis suffers can be quite a lot. Depending on how I feel after that, I normally either have to crawl back into bed and admit defeat, hoping that tomorrow will be better or I have enough strength to carry on with what I planned for the day.

"Normally, by 3 or 4pm, I feel pretty tired and it takes a lot of mental strength to make it to the end of the day when I can get home. When I get home, sometimes I am in such pain and I am so fatigued that I can’t even cook myself dinner. There have been many occasions I have just gone to bed without, too tired to do anything else. On other evenings, I can feel adventurous and push the pain and fatigue to the back of my mind and meet up with some friends in the evening. Of course, I pay for it the next day! An arthritis suffer lives for the ‘okay days’ where you have enough ability to do all you planned, and believe me I cram those days full, as they are few and far between!"

– Carrie Thompson

9. It can be tough on relationships.

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"Having the best support system around you plays a key role in my life, self esteem and general happiness, I have learnt to ditch the friends who no longer serve a purpose in my life or misunderstood me.

"At 20 I entered my first serious relationship; I kept my Arthritis as secret from her the first couple of months before having the courage to drop the "arthritic bomb". It lasted around 3 years before we split. Although I was supported during this time I never felt my partner understood the disease and what I went through. After this I dated a great friend, Sometimes the best person is right there in front of you. She knew about my condition but treated me like I was normal. So it was easier to become intimate, she had seen my good days and bad and still wanted to love me regardless, it made her very protective and fiercely loyal, unfortunately it didn’t work out but we have remained the best of friends." – Francesca Blunt

10. But family and friends can make all the difference.

Catherine Manning

"My husband, Paul, has stepped up to be my carer and helps out with my day-to-day tasks such as getting showered and dressed. I have a small group of close friends too that know how my arthritis has affected me. Both family and friends are there for me, especially on the hard days when everything seems dark and it's all too much. They understand, help out, and cheer me up. I'm very lucky.

"A typical day starts by waking up with stiff, painful, and swollen joints including hands, feet, knees, and hips. Paul helps me get out of bed and washed and dressed. He also makes my breakfast before getting the children ready for school and sorts out my medication for the day. I spend most days at home unless I have hospital appointments or physio, which I can have up to three appointments a week.

"Arthritis is very isolating. Paul and the children come home from school at 3:30pm and I enjoy hearing about their day and what they have been up to. Evening routine is pretty much the same as the morning routine but in reverse."

– Catherine Manning

"My family have been my rock since I developed arthritis. Without their continuous assistance every day, I would not be able to function, or even begin to live a semblance of a normal life – or even have the quality of life I do at the moment.

"I have very few friends, and those who have stayed around since I became sick are fully supportive of me and helping with my condition. My friends are always researching my condition so they can educate themselves. They offer me advice about how best to look after my body, when I don't feel like looking after myself, as I should, especially during the winter months when the weather is extremely harsh and unforgiving to those who have to cope and live with arthritis."

– Monique Francois

11. People can be rude and unthinking.

Keri Webster

"My daughter Mae suffers from stiffness in the morning, and takes a while to get going. That’s not unusual for most people, but it’s a bit different when you consider that Mae is 10 years old. This means that it takes longer for her to get ready and get to school on time. She is also in pretty much constant pain during a flare-up, which fluctuates from day to day and times within that day.

"This is mainly a problem when people think that Mae doesn’t deserve a seat on the bus, or when other kids think that she’s just faking pain and limps to get out of PE. Invisible illnesses are hard for everyone to understand, and Mae is actually remarkably forgiving about this. The other misconceptions mainly revolve around people’s own opinions on the matter; if I had a penny for every time someone told me to take her to a homeopath or change her diet (as though we would not have done our own research on the subject), Mae would still have arthritis, but we could afford a Rolls-Royce to use as a mobility aid."

– Keri Webster

12. You never know what someone else is going through.

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"I get to my desk, make a cup of tea, and begin to work my way through the numerous things I need to get done. My back begins to ache as I’m sat at my desk, so I begin to move around the office. It doesn’t really get much easier, and I just don’t know where to put my body – why is it so useless?! I’ll take some paracetamol to help me get through the next few hours.

"As the afternoon approaches, I feel tired, and my concentration sometimes goes off at a tangent. Of course, this is not the same every day, but it gives you an idea of some of the challenges I face. You, and my colleagues, are probably not aware of any of this – they just see me turn up in the morning and get on with my project work. Outsiders don’t see all the small and big challenges involved in doing everyday tasks: carrying heavy items, walking across campus to a meeting when you’re in pain, sitting in a lecture when you’re fighting against your own body to keep your eyes open.

"Revealing what we believe to be our weaknesses can leave us vulnerable to criticism from others. I won’t be seen as a gentleman for carrying that heavy suitcase down the stairs at the station. I’ll be seen as lazy for asking to arrange a meeting nearby my office. It’ll seem as though I’m disrespectful and disengaged in a conversation if I feel tired and my mind goes blank. As a society, we need to change our attitudes, remembering that every person is living with their own challenges. Be responsible. Be respectful. Be kind. It’s not that difficult, but will make such a difference to those of us living with chronic conditions, like arthritis."

– Simon Stones

13. It's tough on parents as well as children.

Keri Webster

"Mae was 2 when we finally admitted that she wasn’t just trying out a cool new walk, and was actually limping. I’d like to pretend that we didn’t take our time about that, but it’s not true. As first-time parents, we didn’t really know what was normal and what wasn’t, and we didn’t want to just compare her unfavourably to other kids.

"When her knee swelled up and she collapsed, however, we did take her to the GP, and then the hospital. Several worrying days of tests followed, and then several frustrating months of MRIs, joint injections, and denials from the orthopaedic team (“sometimes things like this just happen, it’s not necessarily rheumatological”) before we were referred to the wonderful rheumatology team, who gave us a diagnosis (juvenile idiopathic arthritis), checked out all of her joints, and still have her under their care. Since the age of 5, Mae has been under the care of our local hospital and Great Ormond Street children’s hospital."

– Keri Webster

14. It's hard to plan ahead.

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"Arthritis is a fluctuating condition and is very unpredictable. One day you may feel amazing, and you often do too much because it can often feel like you’ve been temporarily liberated from the condition that you live with. After doing too much, you’ll probably suffer for a few days afterwards!

"Other days, you wake up and everything is so difficult, and you sometimes have to accept defeat and take it easy. This is particularly difficult when studying and working, as you have things in your diary and suddenly your circumstances change because of your health, prompting you to cancel meetings or things you had planned to do. From my personal experience, I often feel that I have let people down by doing this, and it takes an enormous amount of effort to remind yourself that it is sometimes beyond your control. This adds to the anxiety of dealing with arthritis on top of your existing life."

– Simon Stones

15. But you learn to adapt.

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"There are days where it completely takes over – usually when I’m super busy and need to be in a million and one places. However, I’ve lived with it for so long now that my ‘normal’ day-to-day life incorporates quirky ways of living which help me to deal with it to the best of my abilities. To an outsider, it may seem like it is overwhelming and takes over your life. For some people, it really does – particularly those individuals who have been recently diagnosed. Now, after 20 years of arthritis, it’s the only life I’ve ever known – so I’ve adapted and just live my life to the full!

"There’s the obvious physical limitations which arthritis has on my day-to-day life – stiff, warm, and swollen joints, pain, and reduced movement. I’m pretty good at hiding these, though on some days it’s more noticeable than others. Although, for the majority of the time, these physical symptoms of arthritis are invisible to other people, particularly for those who don’t use aids and adaptations to get around. Then there’s the really invisible symptoms of arthritis: excruciating pain, which makes me feel physically sick; fatigue, which leaves me feeling exhausted beyond what you could ever imagine; and the psychological impact that arthritis has – the weight of added responsibility, the constant need to think ‘what if’, and the anxiety that manifests as a result.

"Whatever I do, wherever I look, I am frequently reminded of what I live with. I give all of my energy to do things that I want to do, but there are certain things which are just impossible. I accept that you have to. There are so many other people in the world living with so much more than me, and that recognition gives me so much inspiration to get through it all."

– Simon Stones

Thanks to Arthritis Research UK for their help with this piece.